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Just diagnosed.....

9 years 10 months ago #34927 by Carolann
Hi Pat.....thanks for the info, I have joined the BCAN as well. The urologist that I have was trained in Chicago, he is young and up on all the latest, he is also very compassionate and a good listener. I know the pathology was checked here and in Toronto so I am pretty confident that it is accurate. He has suggested that I could go for a second opinion but I am confident that I have the best in him. My daughter is an ER nurse and he has a office right at that same hospital. In Ontario everything that I have done is covered by our provincial medical plan with the exception of the BCG medicine. It is $180 per treatment however I retired from a bank and they pick up all but $88 and the hospital only charged me the difference on the first treatment and since then has waived the difference which I thought was pretty kind of them....not sure why, they said it was a change of policy. I live right across the river from Detroit, Michigan and we have alot of pollutants in the air due to all the industry here and wonder sometimes if that isn't why we have such a high occurance of cancer in our city. Currently there is only one other women and 20 men being treated here with BCG at the hospital that I go to. Had my 4th treatment yesterday, my daughter and I call it "toxic Tuesdays". Thanks again for your email.....take care, Carolann

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9 years 10 months ago #34904 by Patricia
just be sure they check your urine and your temp before anymore BCG or if there is any blood in the urine. The dosage can be reduced and you might suggest that. On Ask Dr. Lamm's site he has all kinds of information on BCG and reduction of dosage and he's open to all kinds of questions.
You're in a very good province in Ontario..one of the top bladder cancer docs Dr. Michael Jewett at the U. of Toronto.
I'm afraid the docs in your province are better than the ones in Fl...at least in the invasive areas.
By the way there is a Canadian Bladder Cancer network thats just been put into play.
seem to be more people over there with non-invasive. And trying to figure out the different provinces and what they pay for treatment is a real challange.

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9 years 10 months ago #34903 by Carolann
Pat....I am located in Ontario, Canada....we normally spend 6 months of the year in Winter Haven, Florida and the other 6 months back in Canada. This year will be different, we are leaving after my last treatment at the end of this month but I have to be back home for a cystoscope on January 5th. I'm not sure when the maintenance treatments will begin but I'm hoping after the cysto to go back down south for a little longer. This has just knocked us for a loop, I have always been very healthy.

I really appreciate the response from my email and appreciate all the good thoughts....it will help to be able to talk to others that have or are going thru the same as I am. I have my 4th treatment tomorrow and I still feel the effects from last week. Take care and thanks to all that emailed.....Carol

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9 years 10 months ago #34897 by sara.anne
Yes, Carolann....fatigue and flu-like symptoms are classic BCG aftermath. I FINALLY finished my BCG treatments earlier this year. I just planned on treating myself well during the series with lots of naps and nothing major planned.

Lots of good, sympathetic thoughts heading your way.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 10 months ago - 9 years 10 months ago #34895 by CatherineH
Hello Carolann... I'm so sorry to hear of your diagnosis which brought you here, but information is power and there is a wealth of info and experience here. I only found this forum a couple of weeks ago on a day when I was feeling especially vulnerable and looking for some solace somewhere. I have found it here and wish I had known these wonderful folks before my surgery and the subsequent 9 months that followed. I think my fear and anxiety would have definitely been reduced, and now I feel so much better for having found them.

My best wishes for a positive result from your treatments. I think the scariest moment I have faced was hearing that I had bladder cancer from my very matter-of-fact urologist who then referred me to Vanderbilt Hospital. That numb feeling seems to be a universal reaction and I understand your anxiety as does everyone here. I hope you feel better very, very soon.

Hugs... Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 10 months ago #34893 by Joey
Carolann, I have had 18 BCG treatments and I always have the symtpoms you are experiencing and several others. They last about 36 hours and I am then fine.


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